Our story starts like any other. Boy meets girl. Boy
and girl fall in love. Boy and girl get married. Boy and girl start a family.
We had often commented about how perfect was our little family: Mom, dad, baby,
dog. And then one day our whole world changed. Pregnancy wasn’t easy for me. I had all day
sickness which lasted until our son was born. I had preeclampsia which put me
on bedrest 9 weeks before our due date. I was huge, uncomfortable and immobile.
Finally the day came to induce labor. The waiting was over. Cole Daniel Webb
was born on August 13, 2002. Cole came into the world and our lives changed.
We just didn’t know how much yet. Cole and I were given a clean bill of health and sent
home two days after he was born. After we were home we had a minor case of jaundice,
but other then that everything was perfect. Cole was an angel. He never cried.
Everyone who saw him would comment on what a good baby we had. We couldn’t
believe how lucky we were. When Cole was six weeks old our lives changed again.
Cole had thrush in his mouth, very common for babies. One day he cried and cried,
something he never did. “My baby doesn’t cry,“ I told the
doctor. We knew something was wrong. We just didn’t know what. We took
him to the doctor. They discovered that Cole had lost all of his reflexes. A
very “floppy” baby they said. They asked if he had always been this
way. Of course not. Not our baby. Our baby wasn’t floppy, our baby was
perfect. Cole was admitted into the hospital and tests were run. There were
two possibilities, one offered hope and one was hopeless. That night my family
prayed. We prayed for a miracle. We prayed for mercy. We prayed that my son,
my beautiful son would be all right. The next day our fears were confirmed. They thought
Cole had a neuromuscular disease called Spinal Muscular Atrophy, Type 1 (SMA).
We had a disabled child. When I first heard this, the worst thing I could think
of was a wheel chair. My child, my perfect child would have to spend his life
in a wheel chair. Then the statistics came. Spinal muscular atrophy is the number
one genetic killer of children under two. Eighty percent of children with type
1 die before the age of one and ninety percent before the age of two. There
is no treatment. There is no cure. Cole would never have the muscles to walk,
crawl, sit or even hold his head up on his own. Eventually he would lose his
ability to swallow and to breathe on his own. We were to take our little baby
home and enjoy him while he was still here. We were to take our baby home to
die. “This can’t be happening!” I cried.
I had never even heard of this disease. Why hadn’t I ever heard of this
disease. So many questions, never enough answers. We learned quickly more about SMA then we ever wanted
to know. We learned statistics like both parents must carry the gene for a child
to have SMA. We learned that 1 in 40 carry the recessive gene. We learned that
we have a 1 in 4 chance of having another child with SMA with future pregnancies.
We learned about protocols, levels of care, machines for many different things,
all of which may assist our son temporarily but never escape the fact that SMA
is a terminal illness. We are faced with a lot of decisions. Decisions new parents
should never have to make for their child. We should be deciding things like
which outfit should we wear to the park, or does he really need a hat today.
Instead, we have to decide, should we allow a breathing machine when it gets
just to hard. Thus continues our journey with SMA. Our lives changed
in a minute. Our lives are very different. They are much slower paced. They
are minute to minute, instead of day to day. We cherish each minute we have
with our son as if it is our last. We know that we have a hard road ahead, but
we face it together, with our son. This will not be an easy road to travel,
but we hope we have the strength to make wise decisions. Our son is truly an
angel here on earth. Cole is only very little but so far but has touched more
lives then many people who live to be very old. He is truly a gift from God. I, like so many others, had never heard of this disease,
SMA. But if this could happen to my family, it could happen to any family. So
many little children’s lives hang in the balance as they wait for a cure
or a way to manage this awful disease. I have often said, “If only someone
famous had a child, a niece or a someone close to them that had SMA. If only
there was a way to raise awareness about this disease. Parkinson’s disease
has Michael J. Fox, spinal cord injury has Christopher Reeves." There is
no famous spokesperson for SMA. There needs to be. The lives of thousands of
children depend on it. I guess everything happens for a reason and there
is always a lesson to be learned. Slow down. Live for the minute. Cherish your
family, your friends, your children. You never know when they might be taken
from you. COLE'S BAPTISM Cole was
baptized at St. John's Hospital in PICU
Kristin and Dan with
Deacon Paul Stackel
Mom and Dad with Godparents Shannon Munn, Michelle
Newberry and Suzanne Linhardt
Kristin with the sweet
little angel